Patient- and Family-Centered Care

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. The process encompasses the following: providing care with dignity and respect to ensure that patient and family perspectives, choices, knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care; sharing information with patients and families that is timely, complete, unbiased, and accurate to foster effective participation in care and decision-making; and encouraging patient and family involvement at the institutional level through collaboration on policy and program development, health care facility design, professional education, and the overall delivery of care. (Adapted from Advancing the Practice of Patient- and Family-Centered Care, Institute of Family-Centered Care)

As it relates to the provision of pediatric emergency medical services, patient- and family-centered care recognizes the value of a family's knowledge about the patient’s condition, encourages information-sharing to promote participation in medical care decision-making, seeks to help family members retain a sense of control during emergency medical care crises, provides the opportunity for family presence during medical transport or invasive procedures and supports the inclusion of family representatives on committees and advisory councils designed to guide health care organizations and create health care policy.

Resources on the Web

Emergency Medical Services for Children (EMSC) National Resource Center

• Working with Families to Enhance Emergency Medical Services for Children. Developed by emergency care professionals and families who have experienced emergency care first hand, this guide is intended to help state and local emergency medical services agencies, EMSC grantees, hospitals, and family advocates explore the concept of family-centered care and apply it to pediatric emergency medical services. Practical information and tools for conducting internal family-centered assessments are also included. (2001)

• EMSC Family Advisory Network. This section of the EMSC National Resource Center’s (NRC) website provides details on its Family Advisory Network, a project developed to facilitate the inclusion of family representatives in state EMSC programs, and includes information on the project’s family-focused listserv and newsletter. (Accessed August 2008)

• EMSC Federal Performance Measures. This fact sheet outlines performance measures for the Federal EMSC Program that reflect national outcomes needed to improve the delivery of emergency care services to children. Performance Measure No. 68 requires permanent establishment of an EMSC presence in a state or territory’s EMS system, and part of this strategy for permanence is the assignment of a family representative to the state or territory’s EMSC Advisory Committee to ensure that family issues are addressed in the emergency care system. (Accessed August 2008)

Academic Pediatric Association

• Ambulatory Pediatric Association Report of the National Consensus Conference on Family Presence During Pediatric Cardiopulmonary Resuscitation and Procedures. This policy statement, developed through a national consensus conference on family presence during pediatric procedures and cardiopulmonary resuscitation (CPR), establishes consensus guidelines useful for defining policy regarding family presence during pediatric procedures and CPR in the emergency department. (2005)

American Academy of Pediatrics

• Policy Statement: Patient- and Family-Centered Care and the Role of the Emergency Physician Providing Care to a Child in the Emergency Department. This joint policy statement from the American Academy of Pediatrics (AAP) and the American College of Emergency Physicians (ACEP) defines patient- and family-centered care as an approach to health care that recognizes the role of the family in providing medical care; encourages collaboration between the patient, the family, and the health professional; and honors individuals’ and families’ strengths, cultures, traditions, and expertise. (2006)

• Policy Statement: Family-Centered Care and the Pediatrician’s Role. This policy statement outlines the core principles of family-centered care, summarizes the recent literature linking family-centered care to improved health outcomes, and lists various other benefits to be expected when engaging in family-centered pediatric practice. The statement concludes with specific recommendations for how pediatricians can integrate family-centered care in hospitals, clinics, and community settings, as well as in more broad systems of care. (2007)

• Policy Statement: Role of the Medical Home in Family-Centered Early Intervention Services. This policy statement is designed to assist the pediatric health care professional in assuming a proactive role with the interdisciplinary team that provides early intervention services. (2007)

• How to Increase Family Centered Care in Your Practice. The AAP’s National Center of Medical Home Initiatives for Children with Special Health Care Needs section of its website offers checklists, handbooks, and other online resources to assist health care providers in developing family-professional partnerships. (Accessed August 2008)

• Family-Centered Care Publications. This section of AAP’s website includes fact sheets, policy statements, periodicals, articles, and reports related to family-centered care. (Accessed August 2008)

American Association of Critical Care Nurses

• Family Presence During CPR and Invasive Procedures. This Practice Alert states that family members of all patients undergoing CPR and invasive procedures should be given the option of being present at the bedside. (2004)

American College of Emergency Physicians

• Care of Children in the Emergency Department: Guidelines for Preparedness. Developed jointly by ACEP and the AAP, this policy statement addresses family-centered care issues, including education of the patient, family, and regular caregivers; discharge planning; and instruction and family presence during care. (2000)

• Death of a Child in the Emergency Department. This ACEP/AAP joint policy statement recognizes that emergency physicians should use a family-centered and team-oriented approach when a child dies in the emergency department and should provide personal, compassionate, and individualized support to families while respecting social, religious, and cultural diversity. (2002)

American Hospital Association

• Strategies for Leadership: Patient- and Family-Centered Care. The American Hospital Association (AHA) partnered with the Institute for Family-Centered Care to produce this patient- and family-centered care toolkit to support hospitals. It includes a video and companion discussion guide, a resource guide, and a self-assessment tool for hospitals. (2004)

• Patient-Centeredness Bibliography. This section of AHA’s website provides an updated bibliography of current publications and articles related to patient- and family-centered care. (Accessed August 2008)

The CHEST Foundation

• Critical Care Family Assistance Program. This family-focused program was created to assist hospitals’ critical care environments to respond to the unmet needs of families of critically ill patients in hospital intensive care units through the provision of educational and family support resources. (Accessed August 2008)

Emergency Nurses Association

• Family Presence At the Bedside During Invasive Procedures and Cardiopulmonary Resuscitation. This position statement addresses the issue of family presence by recognizing the role that emergency nurses play in advocating for the development of written policies to provide consistent, safe, and caring practices for patients, families, and providers. (2005)

• Family Presence in the Emergency Department. This section of ENA’s website focuses on family presence resources and includes position statements, institution policies, and research. (Accessed August 2008)

• Assessment of Family-Centered Care in the Emergency Department. These guidelines focus on a validation tool to assist hospitals in evaluating family-centered care in emergency departments. The guidelines coordinate with the NRC’s Family-Centered Care in the Emergency Department: A Self-Assessment Inventory. (2000)

Family Voices

• National Center on Family/Professional Partnerships. This section of Family Voices’ website features information on the National Center on Family/Professional Partnerships, a project funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau that provides leadership on implementing the core component of a system of care for children and youth with special health care needs. (Accessed August 2008)

Institute for Family-Centered Care

• Partnering with Patients and Families... Recommendations and Promising Practices Based on recommendations of a workgroup convened by the Institutes for Family-Centered Care and Healthcare Improvement and funded by the Robert Wood Johnson Foundation, this resource includes many examples of best practices drawn from hospitals, ambulatory programs, medical and nursing schools, funders of health care, patient- and family-led organizations, and other health care entities. (2008)

• Advances in Patient- and Family-Centered Care. This resource is for those interested in promoting the understanding and practice of patient- and family-centered care and is a forum for patients, families, and providers from many different disciplines and settings to share ideas and experiences. (2008)

• Advancing the Practice of Patient- and Family-Centered Care: How to Get Started. Providing guidance on how to get started in advancing the practice of patient- and family-centered care, this online publication includes information on creating effective partnerships with patients and families. (Accessed August 2008)

• Bibliography on Medical Education and Family-Centered Care. This online annotated bibliography features a wide-range of medical education family-centered care resources including publications, manuals, and peer-reviewed journal articles. (Accessed August 2008)

• Changing the Concept of Families as Visitors: Supporting Family Presence and Participation. This publication serves as a practical resource to assist hospital units and institutions in re-envisioning “visiting” policies in favor of guidelines that support family presence and participation. (Accessed August 2008)

• Creating and Enhancing Patient and Family Resource Centers. This guide for developing patient and family resource centers addresses a range of issues, including planning, scope of services, selecting and organizing materials, staffing, use of technology, and evaluation. (Accessed August 2008)

• Developing Family-Centered Vision, Mission, and Philosophy of Care Statements. This online resource will help guide organizations through the process of developing vision, mission, and philosophy of care statements that support family-centered care. (Accessed August 2008)

• Developing and Sustaining a Patient and Family Advisory Council. This resource profiles patient-consumer advisory councils, details their structures and activities, and provides guidance on establishing a new council, as well as sustaining the momentum of an existing council. (Accessed August 2008)

• Essential Allies: Families as Advisors. This manual on how to involve families as consultants and advisors in policy and program development includes examples and descriptions of how hospitals, state agencies, community programs, and universities have fostered family-professional collaboration. (Accessed August 2008)

• Hospitals Moving Forward with Family-Centered Care. Designed to encourage hospital staff, governing and advisory boards, and families to engage in a process of change, this publication provides an overview of family-centered care with specific examples to help hospitals translate family-centered principles into practice. (Accessed August 2008)

• Patient- and Family-Centered Care: A Hospital Self-Assessment Inventory. This patient- and family-centered care assessment inventory is designed for use by interdisciplinary teams that include patients and families served by hospitals and serves to guide those who complete it in determining priorities for change and improvement. (2004)

• Self-Assessment Tools for Evaluating Patient- and Family-Centered Practices. These inventories offer guidance on how to assess patient- and family-centered care in a hospital, clinical area, or practice, and to develop a plan to advance the practice of patient- and family-centered care. Available online assessments include, but are not limited to: Patient- and Family-Centered Care in the Emergency Department: A Self-Assessment Inventory; Family-Centered Pediatric Care in Hospitals: A Self-Assessment Inventory; Patient- and Family-Centered Care in Pediatric Intensive Care: A Self-Assessment Inventory; and Patient- and Family-Centered Pediatric Ambulatory Care . (Accessed August 2008)

Institute for Health Care Improvement

• Patient- and Family-Centered Care Organizational Self-Assessment Tool. This self-assessment tool, developed by the Institute for Healthcare Improvement, in conjunction with the National Initiative for Children's Healthcare Quality, allows organizations to understand the range and breadth of elements under patient- and family-centered care and to assess where they are against the leading edge of practice. (Accessed August 2008)

National Association of Emergency Medical Technicians

• On the Same Team: Involving the Family in Prehospital Care. This interactive CD-ROM is designed to assist prehospital care providers in becoming more proficient in engaging family members in the care of their loved ones. It provides background information on the shift to family-driven services and offers suggestions and examples on how to incorporate family-centered care into an emergency medical services system. (2002)

National Association of Social Workers

• Bereavement Practice Guidelines for Health Care Professionals in the Emergency Department. These practice guidelines assist emergency department staff in providing family-centered care to family members coping with the death of a child. It covers phases of care from preparing protocols and procedures to following-up with the family and affected staff. (1999)

Society of Critical Care Medicine

• Clinical Practice Guidelines for Support of the Family In the Patient-Centered Intensive Care Unit: American College of Critical Care Medicine Task Force 2004–2005. These recommendations, developed by consensus-panel process, address: care conferencing to reduce family stress and improve consistency in communication; honoring culturally appropriate requests for truth-telling and informed refusal; spiritual support; staff education; family presence at both rounds and resuscitation; open flexible visitation; family friendly signage; and family support before, during, and after a death. (2007)

Society of Pediatric Nurses

• Family-Centered Care: Putting it into Action. This practice-focused publication co-developed by the Society for Pediatric Nurses and the American Nurses Association is grounded in the family-centered care model, which focuses on the child within the context of the child’s family, not simply on the ill or injured child, and applies across child healthcare settings and specialties. (Accessed August 2008)

Example Practices: Model Programs in Patient- and Family-Centered Care

Children’s Hospital of Philadelphia

• A family-centered approach to care continues to influence patient care practices at the Children’s Hospital of Philadelphia (CHOP). This is demonstrated through both the procedural changes and the physical enhancements instituted within the hospital. For example, there is a family presence at physician-led patient rounds and in the emergency department during resuscitation; family sleep spaces are part of the new unit design of critical beds in the cardiac and pediatric intensive care units; and family members are represented on key hospital committees, including bioethics, clinical research, and patient safety.

  Additionally, the hospital created the Family Consultant Program, which provides for four paid “professional family leader” staff members (whose children are patients at CHOP) to meet with families, create programs, and bring a patient and family voice to communications and patient care. Finally, the hospital established the Family Advisory Council, which serves to represent family issues before senior administrators and clinical leaders at the strategic planning level. Some of Council’s family-centered care projects completed to date include: a family-friendly website; family beepers; communications materials, such as “A Families’ Guide to Billing;” and a patient/family orientation video.

Delaware EMSC

The Delaware EMSC project serves as a model for the integration of patient- and family-centered care practices in prehospital pediatric emergency medical services.

For example, at the local level, the family representative assists with the ongoing implementation of the Special Needs Alert Program (SNAP). Through SNAP, the State Office of EMS collects medical information from families who have a child with special health care needs and, upon receiving consent, shares this information with area BLS and ALS agencies. SNAP provides the mechanism to help local EMS providers gain a better understanding of a family’s medical, cultural, linguistic, and psychological needs.

More recently, the family representative assisted in the design and dissemination of a new survey to demonstrate the positive effects of SNAP. The end result found that families participating in SNAP were satisfied with its structure and, overall, felt more comfortable interacting with the EMS community. Based on these results, the state plans to market SNAP to more BLS providers and to promote a SNAP evaluation section on the state’s Family Voices website.

At the state level, the family representative serves on Delaware’s EMSC Advisory Committee not only as an advocate for child and family consumers of EMS services, but as a relevant voice in the activities and charges of the Committee. This is achieved by involving the family representative in the review of pediatric EMS protocols and in the strategic planning for future EMSC projects. In addition, the family representative serves on several formal councils and committees, such as:

• the Delaware Coordinating Council for Children with Disabilities;
• the Delaware Interagency Coordinating Council for Birth to Three;
• the Delaware Medical Home Program;
• Family Voices (state office);
• the Delaware Partners in Policymaking Training Coordinator; and
• Delawareans with Special Healthcare Needs Medicaid Managed Care Panel.

At the national level, Delaware’s family representative participates in the EMSC Family Advisory Network, is a member of the Bright Futures Title V National Review Panel, and serves as a family representative to the Association of Maternal and Child Health Programs.

Family & Caregiver Resources

Emergency Medical Services for Children (EMSC) National Resource Center

• Getting Started, Staying Involved: An EMSC Toolkit for Family Representatives. This guide provides tips on everything needed to help family representatives get started and stay involved in the planning and implementation of state EMSC activities—including maintaining an effective working relationship with the state EMSC program manager, recruiting community partners and educating legislators. (2008)

• EMSC Family Resources. Developed to provide information to parents and caregivers, this section of the NRC’s website includes resources relating to family-centered care. (Accessed August 2008)

• FAN Mail (EMSC Family Advisory Network). FAN Mail is a newsletter for the alliance of family representatives who actively support state EMSC initiatives, and includes articles on individuals, programs, and activities related to family representative participation in EMSC activities. (Accessed August 2008)

Institute for Family-Centered Care

• Sharing Your Story: Tips for Patients and Families. Patient and family leaders are often asked to share their personal stories, which can often serve as powerful tools for bringing about constructive change in the health care system. This document offers tips for those who are willing to share their personal health care stories. (Accessed August 2008)

• Words of Advice: A Guidebook for Families Serving as Advisors. This workbook for families who are new to advisory roles is a companion to Essential Allies: Families as Advisors and includes self-assessment tools, exercises to identify skills and areas of interest, and "words of advice" from experts serving in advisory roles. (Accessed August 2008)

• Families as Advisors: A Training Guide for Collaboration. A practical step-by-step guide for conducting training sessions appropriate for both families and providers to increase the involvement of families serving in advisory roles, this publication includes handouts and overhead transparency masters ready for copying. (Accessed August 2008)

Families USA

• Resources for Consumers. This section of Families USA’s website provides information on family-centered care issues, such as health care financing and access to health care. (Accessed August 2008)

Family Voices

• Family to Family Health Information Centers. This brochure explains the purpose of and funding for the Health Resources and Services Administration’s Family to Family Health Information Centers grant program. In short, the grant program supports the development of comprehensive health information centers that provide information to families of children and youth with special health care needs. (2008)